Parent Skill #9 — Communicate openly, effectively and often with your child's school

Doing homework. Your child's chronic illness may disrupt school success all the time or intermittently depending on your child's health status. Schools are required by law to provide a fair and appropriate education to all students. Educators want to provide and appropriate education to students with chronic illnesses, but often do not know how to do that.

You are the link between your child and the school, and can provide the information to the educators that will enable them to provide the best possible education services for your child. Arrange a conference, which should include you, your child's teacher(s), the school nurse, counselor, school psychologist (if your child is experience learning challenges), principal and a representative from your child's health care team.

During this initial meeting, the goal should be to explain your child's illness and its potential impact on school, such as frequent absences, side effects of medications, special health considerations at school, fatigue, and activity restrictions.

Participants also should discuss what the other children in the class are to be told about the child's illness. You should discuss this with your child prior to the meeting and be prepared to seek advice from your child's health care team and the educators in attendance.

A critical decision that needs to be discussed is whether your child ought to be considered for placement as a student who is considered "other health impaired" (Individuals with Disabilities Education Act), needs a 504 Plan (Section 504 of the Rehabilitation Act of 1973), or would benefit from another plan to ensure continued school success when regular school attendance is not possible.

Parents should also talk about how special services, such as specialized instruction and physical therapy, can be arranged if necessary now or at a later time. This will serve as only the first of many meetings and conversations between you and your child's school. Communication should occur at least quarterly, and more often if necessary.

Your other children may have difficulty concentrating or staying on task if they are worried about their sibling's illness. So while you are at the school, take the time to meet with their teachers as well. Explain your concerns for all your children. Keep in mind that it is very common for the other siblings to develop jealousy, anger, or feelings of loss. Invite the teachers to call you with any concerns or questions they might have. Remember, the goal is communication and trust between the school and you. At the very least, your other children will benefit from having a caring teacher or other school professional keep an eye on them and be their advocate.


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